I had a chance to meet Sanofi’s Laura Kolodjeski in Washington D.C. last month and not only did we so easily hit it off as friends, Laura also interviewed me about what it was like for my family to have two type 1 diabetes diagnosis in the family. You all know how I can go on and on and so here is Part 1 of that interview. It’s pretty candid considering how comfortable I was speaking to Laura. I hope you all enjoy.

Bad genes or no bad genes, excellent lifestyle habits or not, many are missing the point. The issue isn’t “some people didn’t give themselves type 2 diabetes-it was their genes!” I mean when we focus on that, what are we saying, that some people deserve to be judged and some don’t? I don’t care if someone only ate McDonald’s from their couch their entire life and got type 2 diabetes, they didn’t mean (at least not consciously) to attract harm into their lives.

How about we focus instead on educating everyone to respect each other and to support each other with whatever step of their journey in life they are on. Some people are just not “there” yet. Some people aren’t ready to change their diet. Some people are not ready to listen to recommendations from peers or experts. Some people are. Judging someone because they are somewhere you’re not is not a good idea.

Because wherever you are, I can guarantee there is somewhere you’re not and therefore, you’re just as vulnerable to the judging that goes around.

So what I’ve been pushing on myself lately is:

A: Recognize that just because someone is not in the same place in life you are, doesn’t mean they aren’t trying or that they mean harm or that they won’t succeed in the end. Can you read a person’s mind? Maybe they are mentally getting to a place where they might begin to make big, lasting changes. Your criticism doesn’t speed things up for them-your kindness, patience, and encouragement might, though.

B: Next time you ask yourself why someone does or doesn’t do something, think about what you do or don’t do. You’re not exempt of faults and shortcomings so try not to make a fool of yourself.

C: Support people wherever they are. Do they want to start training for a marathon? Cheer them on. Do they want to get outside once a week for a walk? Cheer them on and think of that feat in the same way you think of a marathon completion.

People firing back and forth over how others see them as responsible for their disease are not getting anywhere. Educate people through your actions and your goodness and honesty. Take responsibility for what you can do for yourself. Admit what you feel you’re not doing well or right. You’ll be surprised how everyone will appreciate your openness and feel they can safely admit to their challenges as well.

Well, I’d be happy to tell you. My ideal diabetes support group meets once a week. That’s a tall order isn’t it? But that’s what I would like. Frequent “support”. There would be plenty of members so that if half of the group can’t show, there is still a group to meet and carry on.

Also, I would like any type of diabetic because that way, we could all become friends and defend each other against the media’s war between the diabetics and spread our ideals all over the land, causing no more arguing between the types ever again! Muahahaha!

Next, I’d like us to all exchange numbers and emails and facebook and twitter handles. I’d like us all to know we can interact later on the DOC as much or as little as we’d like.

My ideal support group would discuss any and all issues brought up by the members of the group. Why not? If we are going to talk about something R rated, we can definitely decide to do so on a pre-established day so those who don’t want to discuss that topic don’t go or meet up at a coffee shop to talk other things.

I think it’s ok to get into groups by “type of diabetic” in order to get down to the technical nitty gritty aspects of living with type 1, 2, and so on. It’s true that a type 1 doesn’t know what it’s like for a type 2 and a type 2 doesn’t know what it’s like for a type 1 so it makes sense if people want to divide up in order to discuss particular things. Maybe people would want to divide up by age as well and that certainly makes sense. I like the idea of meeting with everyone and then splitting up to talk about certain things like motherhood and diabetes or dating and diabetes and therefore specific groups forming for that.

Overall, we’d be a support group utopia! How does that sound?

Today is Friday so we’re supposed to talk about something that involves self love. Getting support is TOTALLY an important part of loving yourself. If you are able to, check out a local support group! If there isn’t one, consider starting one! And if those aren’t options, join the diabetes online community! Check out DSMA and all the support it offers. Oh and read more entries like this one.

I have never interviewed for a job without disclosing my type 1 diabetes in the first few minutes of the interview. I thought I’d make them think “Either she’s crazy or she isn’t afraid of what we’ll think about her”. I’m a fan of bold moves during interviews-makes things more exciting for everyone. I know it was a risk but out of about 10 job interviews in my life I’ve only once not gotten the job (in that case I totally bombed the interview). And I’ve been lucky to have never been fired from a job.

I share this to say that I suspect confidence and demeanor probably do more to create an impression on your employer of reliability and ability than one’s having diabetes. I might be wrong or I might have been lucky but that’s how it’s always been for me. I imagine it helps to look relatively healthy and happy as well. Smiling and assuring them that I take care of myself is something that worked for me (even if that wasn’t all true at the time).

People at school have always known of my diabetes because my mom was very adamant about meeting with all my teachers (even when I was in high school) and looking them in the eye and very seriously explaining what the diabetes thing was all about. She’d insist that whatever I needed to do like test, eat, use the restroom, should not be questioned. (Yay mom!) This made it impossible for me to hide my diabetes even if I had wanted to. Teachers would be very aware of me. I’d get my little snacks out and they’d discretely ask me how I was doing. Or they’d make a little note on my homework or test paper reminding me that if I didn’t feel well or needed something I shouldn’t hesitate to let them know. It was comforting to have them know. I believe that it’s possible I got more tutoring help from teachers because of having diabetes but that could just be a figment of my imagination. If that’s true, then being open about having diabetes sent me extra help, understanding, and support my way.

And then because intense diabetes management has a hard time hiding anyway, I was open with everyone in general about it. I wanted friends to know about my diabetes. I happened to be friends with really sweet, caring kids who all had great parents. That helped a lot. I was never teased or made to feel bad about my diabetes by a peer. But then again, I don’t recall ever teasing or bothering anyone about anything, ever (though I did punch a few boys who deserved it). I think that helped, too. And if someone did say hurtful things, I can’t remember anything about that right now. Weird huh?

*Side Note: I completely understand someone’s unwillingness to share their diabetes with others readily. If my life had gone a little differently with other experiences, had people not been as supportive, or had someone poked fun at me…well, I’m sure I’d done different.

The 2012 Diabetes Sisters Conference is taking place in Raleigh, North Carolina this May 18-20.

I wrote about my experience last year. But that post can’t do it justice because in the past year since the conference, I’ve kept in touch with a handful of the women I met and have been SO thankful for the friendships that have resulted. I would not know these women if it weren’t for this conference and I’ve been so pleasantly surprised at how easy it is to bond with women whose struggle is similar to my own.

This year I’m excited to make this a bit of a family affair. My husband, Alex has been helping Brandy’s husband Chris (along with Diabetes Daily’s David Edelman) to plan the first ever, Partner’s Perspective Program. And Alex will definitely be attending the program. It should be great. I mean, we know our partners deal with a lot and perhaps aren’t too comfortable with telling us for fear of making us feel bad so I think it’s wonderful that there will be a place for them to meet, relate, and discuss the unique aspects of being with someone who has diabetes and all the issues that arise as a result. I hope these partners also gain some insight into what we would like from them in certain situations. I also think it will be a great opportunity for all us women to give our partners a big collective, “thank you!”

I happen to literally have a diabetes sister, my type 1 sister Ana, who will also be attending the conference this year. She used to be a lot more involved with diabetes stuff, even attending the Children’s Congress in Washington D.C. as a Delegate the same year Diabetes Mine’s, Allison Nimlos went. (Allison and her husband will be at the conference, by the way.) Ana also loved her Diabetes Camp experiences as a younger kid and I’m so excited she’ll get to experience this event.

Something I really like about this conference is women with any type of diabetes are welcome. So though I can obviously relate more to someone who has type 1 when it comes to certain things, I find it really wonderful to learn from a woman with type 2 about what it’s like for her. I always end up realizing that we are all really in the same boat. We struggle day to day with making a multitude of choices, choices which impact our health and our lives. We all have to worry about food and pay a little too much attention to it. We all check our blood sugar. We all feel the threat of diabetes complications and we all want to live the best life possible with our diabetes.

That brings me to another awesome benefit of the conference. The learning experience. There are a wide range of speakers on an array of relevant topics to women with diabetes. The speakers are really professional and invested in the topics at hand. I appreciated getting away from my children long enough to take notes about things like heart disease last year and sit and think long and hard about why I take care of myself instead of worry about it in fleeting bits while chasing my kids around the living room.

That’s the other thing. It’s a safe environment. You can laugh, cry, and check your blood sugar without feeling out of place. Brandy Barnes calling her organization “Diabetes Sisters” is right on the mark. It’s rather self-explanatory now that I think of it. If you want to attend, please register quick before it’s too late.

My husband gets sushi at the same place every time. The guys at the sushi bar know him and enjoy chatting in their native language with my husband each time he stops by. Sometimes we stop by together and they always wonder why I don’t get sushi, too. I have always brushed it off saying I just don’t want any when the truth is that I love sushi, but I avoid rice because it makes blood sugar management a little too complicated for me.

The other day I went to this place alone and was thinking of getting my husband some sushi. I got him the usual when I got asked the usual question in Spanish, “Why aren’t you getting any for yourself?” I said, “No, I just don’t want any, thanks…” Then they offered me a free sample to eat on the spot from a little bowl. For something like this I’d typically give insulin and wait a few minutes before eating. So I didn’t take the sample. They asked again, “Really! Try it! It’s got shrimp and avocado and onions!” I have witnessed them doing this to all the customers that stopped by and rarely did anyone refuse a sample. That all sounded delicious to me but those little sushi rolls still had rice so finally, thinking about how I’m supposed to be a diabetes advocate, I explained to the guys the real reason. “I have type 1 diabetes and must give insulin before eating anything and I don’t want to do that right now.”

Silence.

“But you’re young and you look healthy.” “Well, I am young and healthy.” Then I explained what type 1 diabetes was and they asked me about how I give insulin. I explained that I give insulin shots as needed to bring down my sugar and to cover the carbs in any food I eat. One guy said, “I didn’t know healthy people could get diabetes…”, shaking his head slowly. Another nodded enthusiastically and said, “Good for you, you seem very happy for a person with something so serious.”

I thanked them for listening, they assured me they would no longer push me to sample sushi, and we said “adios”.

There really are countless opportunities to advocate for our condition. We should take these opportunities, even if someone has been rude, because if not us, then who?

A few months ago I read a post by a medical student who experimented with pretending to have type 1 diabetes for a week in order to gain a bit of insight into our world. She hopes to serve patients better with her newfound perspective. I was impressed that she even thought to do this and left a long comment adding some things I hope she and other medical students/doctors take away.

Part of my response was this:

“I hope many medical students/doctors read this and take with them your message and this one:

Anyone can do anything difficult for a certain period of time but after a while, a toll does come down on the person. Can you imagine being in medical school your entire life? Do you think you might eventually crack under that kind of intense schedule and pressure? That’s kind of what type 1 diabetes is like. It never ends and there is never a break. I think if doctors understand this and are sympathetic to this, they can really connect with patients and provide them the compassionate ear they often need before being able to really soak in any medical advice. It’s a win, win.”

I thought I might use this example of medical school with doctors from now on because I think it’s an analogy they can relate to and make them really stop and think about how exhausting diabetes is. We’ve got to find clever ways to communicate with them right?

Any other analogies you know of? Remember George’s? It’s an excellent one:

“Imagine having to pump your own heart because it didn’t do it by itself. And when you want to sleep you have to pump it slower. For exercise you would have to speed it up. You would have to know the rate of pumping for every activity. Do you think you could do it? Do you think that would be easy?”

What are some others? Do share.

These analogies are clever diabetes advocacy tools and armor. And they keep me entertained :)

Here I interview my husband, Alex for the second time since this interview. Last time we had just been married a year and this time, since more time has passed, I ask harder questions. Alex is kind of like one of my heroes- Honest Abe Lincoln and so he answered truthfully here. And I have to be honest and say it stung a little. Luckily, love and friendship soothes this kind of pain as well as the knowledge that knowing, at least for me, is always more empowering than not knowing. My interjecting comments are italicized.

Interview with husband about marriage and diabetes:

If you describe me to someone, do you mention my diabetes? Does it come up?

I say that you are beautiful and smart. That you are a great wife, mom and daughter. That you work from home writing for a health site. I also always mention your blog and yes, diabetes always comes up. Diabetes is a big part of what makes you, you. Therefore, I cannot omit that from your description.

Aw shucks…:)

What’s the hardest thing about marriage?

Communication.

What’s the hardest thing about being married to me?

Communication. A lot of times we’re not on the same page.

(Oh honey, tell me about it)

What’s the hardest thing about being married to a type 1 diabetic?

The worry. The worry about seizures at night, low blood sugar when you’re with the kids, the future and the potential damage diabetes might cause you. I have cousins, an uncle, a great aunt, a great grandfather who all died from type 1 or type 2 diabetes complications.

So you’ve seen what you hope is not in my future…

Yeah

Does intimacy get complicated by my diabetes?

Yes it does. (Said much like a general confidently says “affirmative”) It increases your stress level, makes you more likely to be depressed and anxious, all of which affects your hormones. Diabetes can help lead to secondary issues like your PCOS which causes you a lot of pain. High blood sugars really affect you physically, too Diabetes does a lot to this area.

Since we’re being honest…when I’m really happy with you I do make more effort to manage my blood sugars more. Hint, hint.

What about my diabetes management could I change to make our marriage better?

You have a killer sweet tooth and it seems like your anxiety makes you dig into anything sweet that you buy sometimes and overdo it. Then you don’t feel well, are mad at yourself for splurging, and then your mood is changed for the rest of the day. You’re much happier when you don’t overdo sweets because your blood sugars are better but mostly because you are happy with yourself.

So true…so true…

What about my diabetes management would I have to change to make our marriage much more challenged?

Eat unhealthy and not exercise. Your blood sugars do so well when you eat well and exercise. And your self-esteem is great.

Do you think me having diabetes makes me somewhat less of a mother or wife?

NO. (said in an “are you crazy” kind of tone)

Does me having diabetes make it more difficult for you to communicate to me brutally honest things?

No, I just have that problem in general.

lol…yes amor, I know…

Do you ever pity me?

No, not pity, I feel compassion. I wish you didn’t have this disease or that you had a chance to get rid of it.

Does me having type 1 diabetes somehow make our marriage better in any way?

It makes me more appreciative of good health and of life and it makes me a kinder person. And I can see that you having type 1 will help our children be more compassionate about others who are different or who have any kind of challenge or something.

Do you take care of yourself more than you otherwise would if I didn’t have diabetes? Why?

Good question…I think I eat healthier now but I’ve always wanted to take care of myself. My reason for never drinking much soda wasn’t because I thought it was unhealthy, I never drank much because I didn’t like how it made me feel. And I don’t like to think about it… but I also take care of myself more now because I feel like I should in case something happens to you later in life.